Hi! My name is Varvara or Varya. I am the only girl from Ukraine with a rare genetic disease SLC6A1.
I am 4 years old. I love my older sister, mom, and dad but with that, the similarities with my healthy peers come to an end.
I still don't know how to speak, dress, eat on my own, and keep balance when I am walking. My fingers cannot coordinate well and it's hard for me to grab small objects easily.
My biggest dream is to learn how to play with other children, go to kindergarten and make new friends.
SLC6A1 is a name of a gene mutation that happened to me randomly at conception. It is a rare genetic disorder that causes developmental delay, autistic symptoms, and severe epilepsy.
My fight with epilepsy has been throughout my entire life.
My mom says that I have to fight every day and one day I will become an ordinary girl.
But it is hard work, as you can imagine, with lots of tiny little steps in between. To get better, I'll need to take daily medicine called Ravicti as well as go through constant courses of rehabilitation.
With the war in Ukraine, there is no way Varya can be supported through any government-funded programs.
And here is when we will need your help.
It is vital for Varya to continue to do her little steps toward the bigger goal to become healthier and stronger. This year Varya will undergo 8 courses of rehabilitation and she will need to take 81 doses of Ravicti medicine for a total of $36,150
This treatment is a huge chance for Varya to live the life of a happy 4-year-old without pain and limitations.
We ask for your help in the fight against the invisible enemy - SLC6A1.
Together we can do a lot!
Together we can win SLC6A1!
Join Varya's team and let's help Varya in such difficult times for her country.
Thank you so much for your help!
Diagnosis: SLC6A1 disease
Age: 4 years old
The amount needs to be raised: $36,150
Type of collection: urgent
Annual cost of the Ravicti medicine + 8 courses of rehabilitation at the Atlantis Center in Belgium.
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